Arcoxia, anyone on it?

[MickeyJoints]

Hi Folks,

I've been here, just quiet with a few likes here and there. I have a prescription of Arcoxia coming today (probably). I searched the forum but there don't seem to be any recent posts about people using it.

Some report it works well but I also note there can be troubles stopping it. Crucially, does it work for most people?

I've been through HCQ, MTX, LEF all with no benefit. I wake most days at 4:00 with heat and joint pains. My diagnosis is inflammatory arthritis with OA being the main suspect. I appear to have symptoms of both OA & RA: difficulty getting hands moving in the morning with increasing pains in hands and feet as the day wears on, especially in the evening. No RA blood markers. ESR raised but not high.

I was on Etodolac but didn't notice any improvement, so onto Arconia. Just be interesting to hear what others have noticed with it.

MJ

[helixhelix]

I use arcoxia (aka etoricoxib) and it works for me... I have 90mg but it seems that now you are prescribed 60mg. And I take a stomach protector )omeprazole) along with it. These days I don't need it that often, so short bursts of 5 or 6 days when things start to get too uncomfortable.

[MickeyJoints in reply to helixhelix]

Hi Helixhelix,

Interesting - and you titrate to need. Yes, it'll be a 60mg dose. I'm looking for ANYTHING which will work to reduce the pain. All very predictable now while slowly getting worse. It's frustrating not to have a definitive diagnosis which might give a clear treatment path.

Thanks for your response.

MJ

[Damaged in reply to MickeyJoints]

Hate to disappoint you but no it will not. It still requires a period of trial and error to find what will work for you. The joy is , eventually your body with reject it and you begin again, or so it seems. I have not found one that works😞Hopefully there are new things everyday. Young people today are so smart. In the last fifty years average IQ has jumped 30%. So many amazing discoveries in medicine, genetics, and technology. Who knows what is yet to be?

[MickeyJoints in reply to Damaged]

As I've had symptoms since 2012, I'm well used to disappointment

I've had a total of 7 depo steroids and after the third they've stopped working. I believe there is something out there which will work, I just have to find it. I've not got enough points on DAS so I'm considering applying a hammer to my knuckles to elevate my condition to get enough points! Just joking - but it's a thought!

MJ

[Eiram50 in reply to helixhelix]

I take arcoxia too - exactly the same as helixhelix. I had also been made aware that the recommended dose was now meant to be 60mg and although I brought this to the attention of rhuemy , he advised I remain at 90mg.

Out of all the pain meds I take, this is the one tablet, if I forget to take, I know about it in terms of my pain levels ( I know it's not an analgesic ).

Marie

[Simba1992]

Perhaps an idea to check thyroid function and estrogen-progesterone balance. Both thyroid dysfunction and estrogen dominance have been shown to cause joint inflammation and pain and by correct supplementation the symptoms have disappeared. Perhaps an idea to check? 🤔

[MickeyJoints in reply to Simba1992]

Interesting... not had those checks and my nutritionist didn't notice anything in that direction.

*make mental note to check

MJ

[Simba1992 in reply to MickeyJoints]

It's actually quite strange that these things not routinely checked since thyroid dysfunction, even on a subclinical level has shown to decrease the efficacy of RA meds and there is a recommendation to doctors to check on RA patients since thyroid dysfunction often go hand in hand with RA. Perhaps it's again a question of saving money (?). Untreated thyroid dysfunction also increases the risk for CVD, that is one of the main worries in RA!

If you have thyroid tested insist on the whole panel!

[MickeyJoints in reply to Simba1992]

Yes, the cost is probably an issue I would assume. I would think they only test when there are indications that there might be signs & symptoms evidenced.

I'm ok with that. They can't go chasing every possibility and have to spend the money carefully. There's no magic money tree...

[Simba1992 in reply to MickeyJoints]

On the other hand if it really is like some studies say, that nearly 30% of RA sufferers have thyroid dysfunction and if treated in time would prevent worse symptoms and comorbities developing and help meds to work better, then I really wonder if much money and suffering is saved by ignoring what research has come up with and what recommendations say🤔

[Matilda_1922 in reply to Simba1992]

I've had an underactive thyroid for 22 years following the birth of my son. They have never mentioned that both RA and underactive thyroid go hand in hand. What I have noticed that my thyroxine requirements had reduced sinc RA showed up.

[Simba1992 in reply to Matilda_1922]

Here is one recent study.

journals.sagepub.com/doi/ab...

[Matilda_1922 in reply to Simba1992]

Thank you

I'm having difficulty downloading the PDF to read the full paper

[nomoreheels in reply to Simba1992]

Sorry, I had to chuckle... I take it you're not under the NHS Simba? They just don't treat to prevent I'm afraid.

[Simba1992 in reply to nomoreheels]

NHS does seem a bit rigid. But then again you can check your labtest privately can't you? What happens if you check your thyroid for example privately and you get results that point to dysfunction, is your doctor obliged to follow this up?

[nomoreheels in reply to Simba1992]

I don't know having not had need but would think so. It shouldn't be necessary though!

[Simba1992 in reply to nomoreheels]

If RA diagnosed patients are not routinely tested for thyroid dysfunction ( which they evidently should) then from the patients view it would seem neccessary 🤔Would be interesting to know how many on this forum have in fact been tested ( compleate thyroid panel).

[Hidden in reply to Simba1992]

Hi Simba. I asked my gp about a complete thyroid panel and he said I already had one. Apparently it is routinely given here, along with other tests when your doctor needs help to pin down a diagnosis.

I was unaware that I had this test, maybe other people here are too?

[Simba1992 in reply to Hidden]

I have an impression that you in Canada are quite well taken care of 😊

[nomoreheels in reply to Simba1992]

I've been routinely tested previously when I lived in Spain, since I've been back in the UK I've not been tested, complete panel or not. My h, who is diabetic, used to have revision blood tests every 3 months, here it's supposed to be annually, or thereabouts, it can be up to 18 months or more. As well as 3 monthly diabetes reviews they automatically took a PSA (prostate) test. It's a simple but important test particularly if the level rises. Here he's asked about it being taken & told they don't do it as a matter of course. Crazy mad.

[Simba1992 in reply to nomoreheels]

Thank you for the info😊

[helixhelix in reply to nomoreheels]

I had a complete panel early on in the diagnostic process, but not since (it was normal).

I read somewhere that UK doesn't routinely do PSA test because too many false positives. So only test now if symptoms.

[Simba1992 in reply to helixhelix]

A link that may interest you.

err.eg.net/article.asp?issn...

Symptoms of hypothyroidism are very often seen here on this forum, see link. Could it be that they are too often seen as symptoms of RA, as link implys?

[Simba1992 in reply to Simba1992]

Here is still another link.

rheumatoidarthritis.net/liv...

[helixhelix in reply to Simba1992]

That one makes more sense to me, as It seems to be chicken-egg situation. Thanks. The Egypt research I'm less convince about as not sure whether Egypt is an iodine deficient country s much stems from that.

[Simba1992 in reply to helixhelix]

Numerous studies on the subject. One more.

ard.bmj.com/content/71/7/1216

[Lucy11 in reply to Simba1992]

In the interest of getting more replies, I had a complete thyroid panel at my first rheumy appointment but I don't live in the U.K. so I'm guessing my reply doesn't count. Mine was normal.

What interests me more is how many people have their hormone levels checked and advised to take progesterone (either in a cream or supplement) or to stay away from HRT altogether. I find doctors bias to be all over the place. Also, I imagine that follow up testing of hormone levels would need to be done frequently as our hormones are continually changing as we age and keeping those levels right for you would require frequent checks, no?

[Simba1992 in reply to Lucy11]

Read somewhere that every 6m recommended. I think you really need an endo for this, rheumy and Gp not enough usually.

[MickeyJoints in reply to Simba1992]

Hi, so what's the treatment for a hypothyroidism?

[Simba1992 in reply to MickeyJoints]

Depends on what doctor you go to and the severity of your condition. If subclinical can be treated with correct diet together with small amount of T3 or then other doctors give you additional THS to stimulate the T4 turning to T3. Debate over what is better.

[Simba1992 in reply to Simba1992]

I am on the diet and it really makes a difference! 6months before endo appointment. We'll see how it goes...

[MickeyJoints in reply to Simba1992]

Hi, what about foods and supplements? While not entirely convinced with the link between the two (thyroid & RA) it does look promising.

I was wondering about minimising any deficiencies through diet - purely to help balance anything that might be out of balance, if you see what I mean.

MJ

[Simba1992 in reply to MickeyJoints]

Supplements are important. Depending on your underlying condition. Not hard to diagnose if you have hyperthyroidism. Everyone doesn't. I seem to, my blood results point in that direction. RA may not be reversed by fixing dysfunctions and deficiencies but I do believe it will decrease inflammation and symptoms. I also believe that instead of putting all energy into identifying RA symptoms and side effects of meds it is more fruitful to start by getting a picture of what is not working in your body and what your overall health situation is.

[Simba1992 in reply to Lucy11]

This may be the reason why doctors in the UK are reluctant to check thyroids. It's always about money....😞

change.org/p/itt-campaign-g...

[Lucy11 in reply to Simba1992]

I will not dispute that hypothyroidism exists with RA (even if it's not in the majority, it's still significant) but please clarify for me if you are alluding to an assumption that hypothyroidism can cause RA and/ or if treated early enough then RA may have been prevented?

Hypothyroidism is much easier to manage than RA and no doubt if we manage all of our issues then our overall health and RA will be managed better; if you're overweight, work on it. If you smoke, quit. If you're over stressed, work on reducing it. etc. but I'm unclear if you think everything can be linked to the Thyroid?

[Simba1992 in reply to Lucy11]

Hello Lucy,

Yes I am beginning to think that in fact this is the case. There are some studies that point out that a thyroid dysfunction has preceded the breakout of RA. It would be interesting with a study that would show if there would be a decrease of RA diagnosis in patients that test possitive for CCP, have treated thyroid function and those who have CCP and untreated, subclinical hypothyroidism, in other words have thyroid antibodies. This would ofcourse be a bit complicated.

I am beginning to all the more believe that RA in fact is a metabolic disease where thyroid function, estrogen dominance, adrenal overload, gluten metabolism are central as is a functioning balanced microbiome and that the dysfunctional situation has existed for sometime before the breakup of RA when the body can no longer cope with the stressful situation.

[Simba1992 in reply to Simba1992]

sorry meant ofcourse glucose not gluten😉

A link to the above thoughts.

raypeatforum.com/community/...

[Simba1992 in reply to Simba1992]

To continue... so it would seem logical that if these dysfunctions are caught in time and treated perhaps the breakout of RA could be prevented (?)

[Lucy11 in reply to Simba1992]

I hear you. Just be careful and keep your eyes open to both sides--as I believe you will.

Depending on your specific disease manifestation it can turn ugly really fast. I admire your determination to find a cause and effect and I follow it with open eyes.

I share this link with you only in good faith and to play devils advocate.

50kzone.blogspot.fr/2013/07...

[Simba1992 in reply to Lucy11]

Yes, you need to be vigilant but critisism like this is very far from science based. Have read much better ones where facts speak, not emotions. I can only follow my own situation and how different nontoxic treatments affect my individual situation. Fact remains that after diagnosis dec 2015 I have no deformaties, no erosions seen in mri. In other words the progression of my RA has in fact been kept in line so far and now with a new understanding (?) Ray Peats diet works and the difference can be felt daily. I'll just have to follow how my body reacts in the longrun.🤔

[Lucy11 in reply to Simba1992]

Not entirely sure his arguments are only based on emotion and void of fact...but whatever. This link is a forum that has people chiming in on their thoughts.

180degreehealth.com/180foru...

Don't get me wrong, I'm super happy things are going swimmingly for you and I hope they continue to do so. Your disease may have never been erosive to begin with. Let's hope it stays that way! I for one hope you prove the naysayers wrong!

You mentioned in an earlier post that you have 50% improvement with stiffness. Is this enough for you? I have 100% improvement at the moment but I am not in anyway saying it will stay that way or what will happen in the long run.

I will continue to try to find a cause and effect in the same way that you are. My only point was to keep things in perspective and to try and be careful along the way.

Best

Lucy.

[Simba1992 in reply to Lucy11]

Believe me😥I'm battling with these questions all the time! The improvement in stiffness was in relation to what my first treatment protocol achieved. With the new dietary modifications the change is quite big so far. I have only been on the diet for a month or so, so it remains to be seen where it leads me. So far so good.

I think, not using toxic meds in my situation is perhaps a larger perhaps also bit of a philosophical question. I have the least amount of stress when I feel I am protecting my body, trying to understand what has gone and is wrong ( maybe an impossible quest!), really makes me feel in some kind of control and keeps up hope of finding ways to give the right kind of support that would address the underlying causes. I do not see my disease as an enemy like a bacterial, viral or fungal infection would be, that needs the help of meds for the body to survive. The meds in RA do not cure, they help us, in the best of cases, to live a life with less symptoms, which I understand is still for many the only option. The fact however still remains that we know meds give us new problems and are not supporting normal bodily functions and procesesses and this I feel is very sad and a big conflict in my mind. Sorry for the long rant.

[Simba1992 in reply to Lucy11]

Here is a good blog to help you reflect on Ray Peats articles.

peatarian.com

[nomoreheels]

Hiya MJ. I've been on Arcoxia (etoricoxib) since Sept 2011, 90mg/60mg nightly (I'll explain why both doses later) having tried 5 or so other NSAIDs, including celecoxib, which have either failed to work or stopped working. As you can tell by the length of time I've been prescribed it it's worked well for me. I have both RD & OA, it works for both kinds of inflammation.

You're probably aware it's a COX-2 NSAID. Coxibs do carry an increased risk of cardiovascular events in those with existing CVD, generally related to higher dose & frequency of use. I don't have any existing CVD's but as I've been taking it regularly (nightly) & have family history of heart disease so to be sure I'm ok to continue on Arcoxia I have a full cardiovascular check annually. Last December my dose was reduced from 90mg to 60mg in accordance with Gov guidelines (link explains) gov.uk/drug-safety-update/e... & the letter sent to GP's assets.publishing.service.g...

Generally I've managed on my revised dose of 60mg although I do have permission if that's not the case I can increase it to 90mg returning to 60mg once symptoms subside. I usually take it with food but if I need more immediate relief I take it without food as it acts faster. Although the tablets are enteric coated I'm also prescribed 20mg omeprazole.

I hope this helps & you find it works as well for you as it does for me.

[MickeyJoints in reply to nomoreheels]

Hi nomoreheels,

Thanks for your reply. Most useful. Good to have another report of it being effective. I too failed with all other NSAIDs - they just didn't seem to do anything at all (I see they lost efficacy for you.) Great links too.

I've not got any notable CVD apart from mild hypertension so I should be ok with them.

The omeprazole sounds like a good prophylactic but I've not had any of that - there is some expired after my wife had pancreatitis, but it would be better to get some fresh, if I need it! (It should go to the chemist soon)

Great - reasons to be optimistic! Thanks.

MJ

[Barrister]

I've used it and it's worked very well. I can't use it any more as anti inflammatories aggravate my colitis. One thing - whenever I take it I get a funny taste in my mouth but only with drinks e.g. Coca Cola, water etc. Not with food. Clemmie

[MickeyJoints in reply to Barrister]

It seems it comes with caveats but the odd taste is novel! I'm looking forward to taking it tomorrow - the chemist has the order, filled tomorrow.

Thanks Clemmie,

MJ

[margarete-72]

hi iv read up on this drug it's a inhibitor like naproxin..I'm on oxycodone as I can't take tabs but the one ur going on have you read up on it .I have very painful legs ankles knees and hands and shoulders. but all these drugs caused me so much trouble with my bowel including patches. x . read about all the side effects as well . x

[MickeyJoints in reply to margarete-72]

Thanks Margarete, I've just read the PIL and I'm hoping it will be fine for bad reactions so I@ll see how it goes!

MJ

[margarete-72]

I have ostio arthritus and rheumatoid arthritis scoliosis and fibro I'm not taking much as I can't swollow table take I developed dye in fed x I hope u feel better xx

[MickeyJoints]

Hi shell911,

There do seem to be very different judgements made on different sides of the pond! I know some yeast extract spreads are banned in the US, while millions of people enjoy it all over the world daily. Yet bleaching food is ok in the US while even the thought of it being here it's causing quite a bit of a kerfuffle.

The risks to the cardio-vascular system appear to be well known with Etoricoxib and I trust if there was any further evidence of excessive risk, it would have been pulled from the shelves in the UK.

There are a number of people on the forum who have taken it for long periods with no ill effects. I have taken my first one this afternoon and so far so good.

Thanks!

[helixhelix in reply to MickeyJoints]

All NSAIDs carry a degree of cardiovascular risk.....but so does having RA in the first place! Personally it just helps motivate me to look after heart, which is probably a good thing all round.

[Simba1992 in reply to helixhelix]

Hello HH and MJ,

This link may be of interest to you😊

functionalps.com/blog/2012/...

Aspirine may not be a bad replacement for NSAIDs? 🤔

[helixhelix in reply to Simba1992]

It's has a useful part to play, and I do use it as a top up. But no way does it replace arcoxia for me!

[Simba1992 in reply to Simba1992]

The link didn't follow. New try.raypeat.com/articles/aging/...

[Simba1992 in reply to Simba1992]

New try😉

raypeat.com/articles/aging/...

[Chezis21]

I was on Arcoxia for 14mths up to September 2016. My monthly blood test detected kidneys were being affected by the Arcoxia and I had to stop. Kidney function has returned to normal and in the last few mths I have been able to take them on an "as need" basis. They really helped keep inflammation down but I would advise regular blood tests as a friend of mine was on them for a number of years and now has kidney damage.

[sueathome]

Hi MickeyJoints,

I've been taking Arcoxia for more than 5 years now, at the 90mg dose recommended for RA. I tried reducing to 60mg for a few weeks last year, but it didn't do enough for me, so I reverted to the 90mg. I've had no ill effects, although I am also on a daily dose of Lansoprazole (30 mins before my evening meal), and I take the Arcoxia with or straight after breakfast. Having tried several other NSAIDs over the years, including other 'coxibs', this one is definitely the best one I've taken, and is effective.

I hope it works as well for you. Sue

[MickeyJoints in reply to sueathome]

Hi SueAtHome,

That's useful - thanks. I tried it in the morning but I thought it made me a little noddy/sleepy, but today, after taking it last night, it's not really had any effect. So I'll take it in the morning.

I'm just so keen for it to work, as since I started with these troubles in 2012 I've not had any effective pain relief. Miserable at times... just stated a flare too, with puffy feet for the first time. The disease progresses...

So, 60mg tomorrow morning!

Cheers,

MJ

[sueathome in reply to MickeyJoints]

Hi MJ,

It may take a few days or even a couple of weeks to start working. NSAIDs aren't like paracetamol, as they reduce inflammation and this can take time to have an effect on your joints. Hang on in there, take them regularly and hopefully it'll work for you. If you notice some effect after a few weeks, but not enough, you could always try requesting the 90mg dose. Last time I looked, that is what is recommended for RA.

I do take painkillers as well when I need them, as every day can be different, and as you mentioned, this is usually first thing in the morning and then again in the evening. I don't have the RA blood markers either, so have been diagnosed with 'sero-negative' RA (i.e. all the symptoms, but not the rheumatoid factor in the blood). I started on sulfasalazine, then methotrexate, then worked my way through 3 different anti-TNFs, until they finally gave me tocilizumab which works for me.

I tend to give each treatment 3-6 months before I decide whether it's effective or not, and then go back and give them my opinion! I hope you have a good rheumy that you can talk to, as even a good GP won't have all the options. Treatment needs to come before your joints get damaged, not after!

Best of luck, Sue

[MickeyJoints in reply to sueathome]

Hi Sue,

Thanks for the encouragement with sticking with it. Each time I start a new drug, I get into a mindset of being hopeful that this could be the one to make a difference. Not fix me, just make a difference.

I understood NSAIDs work on ingestion rather than any delay in effect. I've got a months supply so I'll see if they work or not.

I too am sero-negative so no hope of biologicals. I've been through HCQ, MTX & LEF. All tried for about 6 months each.

Perhaps this one might do the trick! I'm hoping.

MJ

[sueathome in reply to MickeyJoints]

Hi MJ,

How are you getting on with the Arcoxia? Hope it's helping. I was told it was something to stick with, as it takes time to reduce the inflammation, which doesn't happen in a day. Then if it works, you need to keep on taking them to maintain the effect.

Don't give up on the hope of getting biologicals. As I said, I'm sero-negative, and I'm on my 4th type. The first 3 were anti-TNFs. Tocilizumab is also a biological, but works in a different way. Initially, they said I didn't meet the criteria (the DAS test), but luckily I had an understanding Rheumy who wanted me to have them. I find the best thing was to emphasise the pain & soreness during the test, having checked up what the questions would be in advance. It helps if the test is done at a time of day when your hands are at their worst (they don't take feet into account in the UK), so they can see any swelling.

So don't despair, you should get them if you need them, but you have to push!

Sue

[MickeyJoints in reply to sueathome]

Hi Sue,

Thanks for following this topic. I've been taking the tablets, as the Dr ordered. Not noticed a great improvement as I'm having a flare. I go to the supermarket and as I go in the door my feet are starting to tweek at me. When I get home I can hardly walk, my feet are so sore.

Good to hear that your Rheumy got you on biologicals without the DAS score criteria. I have the impresssion mine wont budge off the criteria so I'm not hopeful.

Sero-negative? Me too. I'd read that you can become sero-positive for no good reason, but the nurse said, no, if you don't test +ve once, you'll not get a +ve change later on. (perhaps I might ask the group's wisdom on that one to get more responses.)

Apart from the pain and loss of function - like wearing too small a set of marigolds all the time - I do have swollen joints, but not reddened. They are become more obvious too.

Thanks for dropping by!

MJ